“A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. But....there is no word for a parent who loses a child, that's how awful the loss is!” - Jay Neugeboren, An Orphan's Tale 

When I was asked to write this blog for National Bereaved Parent’s Day, I jumped at the chance. The death of a baby or child carries with it many losses, felt day in and day out. Losses which are often unseen or not fully acknowledged by the world at large, especially as time moves on.  

Sometimes people can unintentionally make things worse by comparing or ‘helping’ us to focus on the positives: “When my nan died…” or “You have/will have other children!” 

My road into working as a Bereavement Support Advisor for The Lullaby Trust was not one that I had foreseen. Holding my firstborn in my arms I was overcome with such profound love. This impossibly perfect little being who hours before was tucked up safely beneath my heart. It was as if my whole world fitted into his teeny scrunched up fist. I wished him nothing but joy; excited for the adventures and stories that lay before him - that lay before us both. Nine years later, holding the incomprehensibly still body of his sister to my heart I felt the same depth of love but this time it was matched by the gut-wrenching magnitude of her loss. No more adventures to be had, and stories read to her little graveside rather than nestled with her siblings in my lap. As a newly bereaved parent, my world was torn in two, and I was floating intangibly between its two halves.  

Support from other bereaved parents was a lifeline at the time, and I see this every day now at The Lullaby Trust, where we provide bereavement support, 365 days a year, for families following the sudden and unexpected death of a baby or young child.  

Lived experience and the shared understanding of continuing love and pain can feel very healing. There are those more predicable elements to bereavement narratives such as: the ‘what should have been’ and the ‘what will never be’; the sudden changes in identity: the loss of innocence. But other bereaved parents have visceral knowledge of the long anxious nights of “has my other child stopped breathing?” They get the torturous significance of carefree family photographs, taken just days before the death: the overwhelming and disorientating permanence of understanding that you can’t unknow or un-feel, or go back to what was before.  

Importantly, our shared lived experience provides a realisation that “I feel free to have a good moment or day!” Laughter and lightness provide such relief for the grieving parent’s soul, especially where feelings of guilt and shame are present. Shared lived experience reduces fear, which can sometimes cloud the perception of the grieving parent’s narrative or needs. Grief brings love, pride, connection; cherished moments of tenderness and joy, often connected to time spent with their child’s body in the days and weeks following death.  

Misplaced expressions of sympathy (and sadly sometimes disgust) bring lasting pain to beautiful and sustaining memories. Whereas being able to lovingly describe those final tender moments to a warm and receptive other can feel like they and their little one are being held. Bereaved parents are as unique and multifaceted as the child they are remembering. By following their lead and embracing their ongoing connection they have the freedom to express the full experience of grief from the rawness to the heights of their love, often yielding remarkable signs of meaningful growth. 

The Lullaby Trust website has a range or resources that you might find helpful for your personal development, or if you are working with bereaved parents or other family members. There are a range of ways to get involved and receive peer training if you have personal experience of baby/young child bereavement.  

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